Yarmouth family seeks service dog for disabled boy

WEST YARMOUTH – A local boy's easy-going nature inside his family's Cocheset Path home is an incomplete chapter in a complicated story that began in a Kazakhstan orphanage, included time in a children's psychiatric hospital and has alternately challenged and inspired educators, doctors and therapists.

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By PATRICK CASSIDY

capecodtimes.com

By PATRICK CASSIDY

Posted Apr. 3, 2011 at 2:00 AM
Updated Apr 3, 2011 at 8:56 AM

By PATRICK CASSIDY

Posted Apr. 3, 2011 at 2:00 AM
Updated Apr 3, 2011 at 8:56 AM

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Service dog fundraiser

- A benefit dance will be held to raise money for a therapeutic service dog for Nickolas Qvarnstrom from 6 to 10 p.m. Saturday at Yarmouth Moose Lodge, 769 Route 28, South Yarmouth.

- A cash...

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Service dog fundraiser

- A benefit dance will be held to raise money for a therapeutic service dog for Nickolas Qvarnstrom from 6 to 10 p.m. Saturday at Yarmouth Moose Lodge, 769 Route 28, South Yarmouth.

- A cash bar, food, a silent auction, a raffle and a DJ will be featured.

- Tickets are $20 for adults and $5 for children if purchased in advance. Mail checks to Cape Cod Community Angels c/o Jodie Pear, 20 Mockingbird Lane, West Yarmouth, MA 02673. Tickets can be picked up at the door. Tickets bought the night of the event are $25 for adults and $10 for children.

WEST YARMOUTH – Nickolas Qvarnstrom tells elaborate stories through his drawings of Peter Pan and other Walt Disney characters.

It's a fairy tale world the 10-year-old boy was seemingly happy to share with a stranger recently as he quickly flipped through a notebook to his depiction of an American flag.

“I didn't want to draw all of the 50 states,” Nickolas said of his decision to include only one large star on the flag. “That would just be a waste of time.”

But the boy's easy-going nature inside his family's Cocheset Path home is an incomplete chapter in a complicated and difficult story that began in a Kazakhstan orphanage, included time in a children's psychiatric hospital and has alternately challenged and inspired a small army of educators, doctors and therapists.

Since the age of 3, Nickolas has been in occupational therapy and was subsequently diagnosed with a host of cognitive and behavioral disabilities.

“It has been hard,” said his mother, Tina, 39. “It has been emotional. It has been scary at times.”

Now the family, burdened by the financial weight of Nickolas' care, is trying to raise money to pay for a service dog that may make a big difference in all of their lives.

Tina, who friends and family say is an ideal parent, adopted Nicholas and his sister Abby in 2003. The children lived together in the same orphanage located in the former Soviet republic but are not biologically related.

Single and successful Tina – Tina Nahkala when she traveled to Kazakhstan for the adoption – decided the time was right to become a mother.

Nickolas was almost 3 years old at the time, Abby 7 months. Despite the age difference, Nickolas was Abby's size. He was never outdoors at the orphanage and the shoes he wore to the United States were too small for him.

There were physical delays and his muscle tone was weak, Tina said.

The aspiring mother knew raising him would be a challenge but “he was too darned cute,” she said, pausing occasionally during an interview in her family's home to ask Nickolas to turn the volume down on the television, where Scooby Doo and the gang were solving another mystery.

Simple actions like stepping up onto a sidewalk were difficult for Nickolas at first, Tina said.

Still, even with limited ability to speak English, he did well at preschool in the beginning, she said.

But behavioral issues soon began to crop up. Nickolas was diagnosed with Reactive Attachment Disorder (RAD), a condition common among children who are adopted or who have been abused.

Symptoms range from a child who simply does not want to be hugged “to the Jeffrey Dahmers of the world,” Tina said.

Over the next several years, Nickolas was seen by a host of doctors and diagnosed with a dizzying array of behavioral and mental disabilities: RAD, mood disorder, Pervasive Developmental Disorder, autism and anxiety. Doctors are trying to determine whether Nickolas has Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), which he was previously diagnosed with, or Sydenham's Chorea.

He developed tics, exhibited violent outbursts and was suspended from school for aggressive behavior, including once holding a pair of scissors up to another student.

By the third grade, it was obvious that Nickolas could no longer attend public schools.

“Everything changed,” Tina said.

Nickolas was emotional and violent, his actions forcing teachers to clear classrooms.

He would become frustrated with small difficulties and spiral out of control.

“I couldn't go to the restroom and leave him because he was so violent,” Tina said, adding that her son has hurt her mother and punched her husband, PJ, in the face. He has also acted aggressively toward 8-year-old Abby.

Expenses began to pile up and Tina was forced to leave her job to take care of her son full time. She and her husband, who were self-sufficient in their former lives, moved in with Tina's parents.

Out-of-pocket expenses for Nickolas' care rose to $28,000 for a single year. The family traveled to Texas to see a specialist, paying $12,000 for the consultation.

While some things helped, successes were often followed by more challenges.

Despite attempts to keep Nickolas in public schools, in third grade he transferred to the Osterville-based Cape Cod Collaborative, which provides special education services to students from across the Cape.

Starting at the new school was difficult, Tina said. Nickolas would not get on the bus at first.

It was around this time that the family began to recognize the calming influence that dogs had on Nickolas.

Joan Cancilla, a licensed marriage and family therapist who works at the collaborative three days a week, introduced Nickolas to her 2-year-old standard poodle, Bella.

Cancilla, who has a private practice in Eastham, said it is often easier for clients to talk when they are focused on playing with a dog.

“I think it's because they're just so accepting,” she said of canine companions. “You don't have to worry about a dog judging you or acting right with a dog or saying the right things.”

She soon began to take Bella to meet Nickolas at the bus.

“It gave him a positive experience in the morning,” Cancilla said.

Cancilla would then drive Bella to the collaborative, where Nickolas could visit with the therapy animal outside.

“He also had to learn how to share her a little bit, which was a good experience for him and the other kids,” Cancilla said.

Nickolas became close to other dogs, too, including Lily, a black Labrador owned by Arlene Greer, the office assistant at the South Yarmouth office of Debora LaMonica, a psychiatrist Nickolas visits.

“There are no words for what she does for these kids,” Greer said of Lily, who is not trained as a therapist dog.

When Nickolas first came to LaMonica's office, he was not happy, Greer said. Now he looks forward to visits because of Lily. The pair watch movies and episodes of “Scooby Doo” together.

“At least a dozen times, he fell asleep with his head on Lily's back,” Greer said.

Greer, like other people who know the Qvarnstroms, says they epitomize the unconditional love parents should have for their children.

“To work with this family has changed my life,” said Cameo Hill, an in-home therapist with Child and Family Services of Hyannis who helped the family find a Kansas-based organization that trains service dogs to work with children like Nickolas.

“I thought it would be such an easy thing to find,” Hill said.

But such a service, although clearly in great need, is rare, she said.

CARES Inc. in Concordia, Kan., has placed more than 1,000 service dogs since the not-for-profit opened in 1994, said the organization's canine assistance director, Megan Lewellyn.

The dogs serve a variety of roles but are not traditional guide dogs like those used by blind people, Lewellyn said.

Puppies from the organization's own breeding stock and donations from breeders are sent to foster homes at 8 weeks of age to learn basic obedience, socialization and general manners, she said.

At about a year old, the dogs are brought back to CARES, where they undergo more advanced training before being placed with a client when the animals are between 14 and 16 months old.

Before that can happen, clients must travel to Kansas for a training program that can take five or 10 days depending on the needs, Lewellyn said.

While the trained dogs from CARES are relatively inexpensive at $2,500, the Qvarnstrom family must pay to fly out to Kansas and bring the animal back with them.

For just Nickolas and Tina the total cost, including the dog, is estimated at $5,000, money they are trying to raise through a fundraiser scheduled for Saturday in South Yarmouth. Any other money raised will go toward bringing Abby and PJ along, Tina said.

Accepting help from others is “humbling,” PJ said Friday.

“We are so grateful,” he said. “We've broken down in tears more than once about the outpouring of support.”

PJ and Tina met on the dating website eHarmony and the couple immediately talked about Nickolas, PJ said.

PJ, who was brought up around other people with disabilities, was not dissuaded by the challenge Nickolas presented and the couple married in 2007. “That didn't matter to me,” he said. “He was my son at that point.”

Nickolas loves so much that it can hurt, PJ said, adding that hugs from the growing boy can often be painful.

But the family, and especially Tina, have worked to overcome these types of behaviors, PJ said.

“She transformed that with him,” PJ said of Tina working on hugging therapy with their son.

Although PJ was originally skeptical about getting a dog, he has come around after seeing the effect the animals have on Nickolas and because his wife believes it will make a difference.

There are also other, less obvious, advantages to getting a dog for Nickolas, PJ said.

Currently, PJ, who works during the week, spends most of his weekends with his son to relieve his wife.

If the dog can accommodate some of Nickolas' needs, there will be more time for Abby, he said.

Getting the family's story out could also help others, he said, adding that someone may hear about the use of a service dog or have a child with some of the same issues Nickolas has and get in touch.

“This is to help somebody else more than it is to help ourselves,” he said.